HIV Support Group

HIV (also known as human immunodeficiency virus, and formerly known as HTLV-III and lymphadenopathy-associated virus) is a retrovirus that primarily infects vital components of the human immune system which can lead the syndrome known as AIDS. Many of the problems faced by people infected with HIV result from failure of the immune system to protect from opportunistic...

The date of your death-would you like to know?

It has been my hobby to discuss and debate theology on the internet. Someone recently posited this question:

If you could know the day and time of your death, would you like to know?

Of course, none of the members there has the type of perspective that we who live with HIV/AIDS have. Some of us were diagnosed long enough ago that the words 'death sentence' were actually used when referring to our prognosis. :shock:

I thought I'd share my response to the question, in case any one is interested, or would like to share their feelings on the subject.

My first response to the thread was this:

As a person who was given a supposed 'death sentence' over 19 years ago, I certainly would like to have known THEN the actual date of my death. It would have saved me so much worry, self pity, fear. I've lived a major portion of my life now in a state where every time I take a cold, I think it's the beginning of the end and I'm about to die. Crazy.

When a doctor told me a year or so ago that I'd probably have to start taking the medicine in the next few years, and that once I start the medicine, he can almost guarantee me another 10 years of decent-quality life -- I about fell off his table. I had no idea I'd live this long with HIV. (His guarantee, of course, doesn't preclude me from getting hit by a bus. And with my luck, now that I'm sober, I'll meet my fate at the hands of a drunk driver or something. Life is so weird.)

Today, I wouldn't want to know the date of my death. I have too much to live for today to start all that worrying again. I just have to live IN today FOR today, one day at a time now. I don't have the luxury of thinking into what might happen in the future, though admittedly, it's hard not to worry about it sometimes.

Later, I added this next post in response to a comment from another poster who asked, essentially, what it's been like to live almost 2 decades with a death-sentence diagnosis:

Yeah, it's such a bizaare thing.

Here's how the past two decades have played out for me:

Year 1 - Diagnosis. Doc says I'm going to die. I ask, "When?"

"Soon" he says, "Likely within 3-5 years."

Years 1-5: I go through almost all the stages of grief: denial, anger, bargaining, depression ... but wait! Stage 5, acceptance - it doesn't come because, well, I still wasn't even remotely sick yet.

Years 5-9: Docs say, "We don't know why you haven't died yet, but we assure you that you will. Everyone who gets this disease dies. There's no cure and it doesn't appear that there will ever be a cure." One doc calls me the 'worried well' so that's how I live for the remainder of the decade ... worried, but mostly physically well. Emotional health is another story. I spend most of this time period in a state of severe depession, running around like Chicken Little, waiting for the sky to fall.

Years 10-15: Still worried, but by now some level of acceptance has set in. I accept the idea that I'm going to die, sooner now than I thought before, because, after all, who the hell lives this freaking long with my disease? These are the panic years. At the same time, I still haven't died yet, or even gotten sick for that matter. I marry, hoping to have someone in my life who will take care of me when the time comes. I even have a baby. Doesn't look like I'm dying, but hey, who am I to question tens of thousands of brilliant doctors, and the CDC.

Years 15-18: Knowing full well now that I've certainly outlived my prognosis (by more than a decade!) I am certain that the clock has almost run out. Now I have a child that I selfishly brought into the world, knowing full well that I was soon to die and leave her behind to fend for herself. The marriage dissolves, but cruelly, I continue live on. I spend these years questioning the very existence of God, and nearly drinking myself to death. I may as well kill myself since I'm as good as dead anyway.

Somewhere in between year 18 and 19, the new prognosis is revealed. The newly developed medicines are highly successful. Come to find out, people are living long and healthy lives with the very disease that they told me would kill me 'soon' in 1990. The bastards! I wish I had never been diagnosed, except for that being diagnosed helped to prevent me from spreading the disease to others.

I finally get sick and tired of being sick and tired. Someone in an AA meeting tells me, "You can be bitter, or you can get better." I decide to get better. I stop (for the most part) living my death and start trying to live my life. Now they say I might live, hell, another 10 to even 20- years!! WTF!

Like I said, I had to quit worrying about it. It's probably a fairly decent idea that we exist knowing that we will die eventually, but not actually knowing the dates of our deaths. Fear is a cruel task-master. It can make you do crazy things. My whole adult life would have been different if I had not known my diagnosis and been given the prognosis that I was given. But then, I ask myself, different in what respect? Unlike the movie "The Butterfly Effect", we don't get to know what would have happened if any one event in the chain of our lives had played out differently.

It's best just to live in today. As Jesus said, tomorrow has enough worry, all by itself.

Wow, thank you so much for sharing this. When I first starting reading this post, I got the impression that this is another depressing story, but as I kept reading, it is a great story that takes us thru the years of your life with HIV and has given us hope.

I am going to print this thread and save it. Each time I feel down and think my future is bleak, or living with HIV isn't real, I'll refer back to your story and remind myself that it is in fact a reality. The tomorrow will come soon enough, I'll remember to live in TODAY.

I want to say Thank you as well for the posting. It does provide hope for those of us who are affected and loved ones of those infected with the virus. Would I like to know when I am going to die? No, I think I will just put that into God's hands and when it is time for me to go, I will meet him and other loved ones in heaven...Thanks again for sharing...~Doll~

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